Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Hi Joanne One of the necessary things with melatonin release I understand is for total darkness in the room. If a child sleeps in a room with a light on, it affects the quality of the regenerative sleep.. Many people have blackout linings on curtains to ensure good quality sleep. Tracey On Tue, Oct 5, 2010 at 8:42 AM, Joanne <joanneallman@...> wrote: I've just started giving my son melatonin with great results! He's always had difficulty settling at night, although he normally sleeps through. He's now falling asleep a good couple of hours earlier than usual, about an hour after taking the melatonin. I'm giving him just 1 mg (he's 10 and weighs about 80 lb). I was (pleasantly) surprised at how well it works, as 5HTP did nothing for him, in fact, seemed to make him more hyper. Does the fact that he's responded well to melatonin but not to 5HTP suggest that he has a problem converting seratonin to melatonin? My question is: is it OK to give melatonin every night? Or will it promote dependency, and become less effective, meaning I will need to increase the dose? Thanks, Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Tracey, that is so true... we have always had to black out the room and the whole upstairs, in fact we switch the electrity off upstairs, and use very dark curtains and black out blinds etc. We sleep better this time of the year than in the summer... thank goodness eh! x Re: Melatonin Hi Joanne One of the necessary things with melatonin release I understand is for total darkness in the room. If a child sleeps in a room with a light on, it affects the quality of the regenerative sleep.. Many people have blackout linings on curtains to ensure good quality sleep. Tracey On Tue, Oct 5, 2010 at 8:42 AM, Joanne <joanneallman@...> wrote: I've just started giving my son melatonin with great results! He's always had difficulty settling at night, although he normally sleeps through. He's now falling asleep a good couple of hours earlier than usual, about an hour after taking the melatonin. I'm giving him just 1 mg (he's 10 and weighs about 80 lb). I was (pleasantly) surprised at how well it works, as 5HTP did nothing for him, in fact, seemed to make him more hyper. Does the fact that he's responded well to melatonin but not to 5HTP suggest that he has a problem converting seratonin to melatonin? My question is: is it OK to give melatonin every night? Or will it promote dependency, and become less effective, meaning I will need to increase the dose? Thanks, Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 DH sleeps in eye mask... the one's you get on airlines... as he says he needs the dark.., but he likes windows open for fresh air.. so black out roller blinds do not work.... We have added black out curtain lining too. Tracey On Tue, Oct 5, 2010 at 10:56 AM, Barrett <sandrabarrett@...> wrote: Tracey, that is so true... we have always had to black out the room and the whole upstairs, in fact we switch the electrity off upstairs, and use very dark curtains and black out blinds etc. We sleep better this time of the year than in the summer... thank goodness eh! x Re: Melatonin Hi Joanne One of the necessary things with melatonin release I understand is for total darkness in the room. If a child sleeps in a room with a light on, it affects the quality of the regenerative sleep.. Many people have blackout linings on curtains to ensure good quality sleep. Tracey On Tue, Oct 5, 2010 at 8:42 AM, Joanne <joanneallman@...> wrote: I've just started giving my son melatonin with great results! He's always had difficulty settling at night, although he normally sleeps through. He's now falling asleep a good couple of hours earlier than usual, about an hour after taking the melatonin. I'm giving him just 1 mg (he's 10 and weighs about 80 lb). I was (pleasantly) surprised at how well it works, as 5HTP did nothing for him, in fact, seemed to make him more hyper. Does the fact that he's responded well to melatonin but not to 5HTP suggest that he has a problem converting seratonin to melatonin? My question is: is it OK to give melatonin every night? Or will it promote dependency, and become less effective, meaning I will need to increase the dose? Thanks, Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 my son has this irrational fear of the dark , which comes and goes ( back with a vengeance at the moment ;-(( so still woke up even when I gave him the slow release melatonin . On another note is there any supplement I could give him as he seems to wake up after about 4hrs of sleep .....I remember reading about liver life but I can't find that post now. TIA Nina x > > From: Barrett <sandrabarrett@...> > Subject: Re: Melatonin > Autism Treatment > Date: Tuesday, 5 October, 2010, 4:46 > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > Do any of you guys know if melatonin would help with STAYING > asleep? > I know it works with getting off to sleep, but not sure it > helps with staying asleep during the night. > My dd has never slept through the night, because as a child > she would seizure... and this has created, I am sure a fear. She wakes up > every couple of hours through out the night... not sure if this is now a habit, > a movement pattern or what... anyway, we trailed melatonin about 15 years ago, > and it did help, but now the problem is staying asleep. We are going to > see a sleep consultant in a few weeks... just to check, but wanted to ask if any > of you parents have a similar situation? > Thanks > > > Re: > Melatonin > >  > > > I have found the best way to work is to give same time each night for > several nights in a row and then try without, with Sam I found once the body > clock was reset he was OK then for a few weeks, then he would start being > later each night and then I'd go back in with another 3 days worth and so on. > The best dose is the smallest dose that works when you are using it for sleep. > >  > Mandi x >  > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > joanneallman@... writes: > My > question is: is it OK to give melatonin every night? Or will it promote > dependency, and become less effective, meaning I will need to increase the > dose? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 my son has this irrational fear of the dark , which comes and goes ( back with a vengeance at the moment ;-(( so still woke up even when I gave him the slow release melatonin . On another note is there any supplement I could give him as he seems to wake up after about 4hrs of sleep .....I remember reading about liver life but I can't find that post now. TIA Nina x > > From: Barrett <sandrabarrett@...> > Subject: Re: Melatonin > Autism Treatment > Date: Tuesday, 5 October, 2010, 4:46 > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > Do any of you guys know if melatonin would help with STAYING > asleep? > I know it works with getting off to sleep, but not sure it > helps with staying asleep during the night. > My dd has never slept through the night, because as a child > she would seizure... and this has created, I am sure a fear. She wakes up > every couple of hours through out the night... not sure if this is now a habit, > a movement pattern or what... anyway, we trailed melatonin about 15 years ago, > and it did help, but now the problem is staying asleep. We are going to > see a sleep consultant in a few weeks... just to check, but wanted to ask if any > of you parents have a similar situation? > Thanks > > > Re: > Melatonin > >  > > > I have found the best way to work is to give same time each night for > several nights in a row and then try without, with Sam I found once the body > clock was reset he was OK then for a few weeks, then he would start being > later each night and then I'd go back in with another 3 days worth and so on. > The best dose is the smallest dose that works when you are using it for sleep. > >  > Mandi x >  > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > joanneallman@... writes: > My > question is: is it OK to give melatonin every night? Or will it promote > dependency, and become less effective, meaning I will need to increase the > dose? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 However research has shown that many ASD children don't make enough of their own melatonin even under such ideal dark circumstances - hence the need to supplement Sent using BlackBerry® from Orange Re: Melatonin Hi Joanne One of the necessary things with melatonin release I understand is for total darkness in the room. If a child sleeps in a room with a light on, it affects the quality of the regenerative sleep.. Many people have blackout linings on curtains to ensure good quality sleep. Tracey On Tue, Oct 5, 2010 at 8:42 AM, Joanne <joanneallman@... <mailto:joanneallman@...> > wrote: I've just started giving my son melatonin with great results! He's always had difficulty settling at night, although he normally sleeps through. He's now falling asleep a good couple of hours earlier than usual, about an hour after taking the melatonin. I'm giving him just 1 mg (he's 10 and weighs about 80 lb). I was (pleasantly) surprised at how well it works, as 5HTP did nothing for him, in fact, seemed to make him more hyper. Does the fact that he's responded well to melatonin but not to 5HTP suggest that he has a problem converting seratonin to melatonin? My question is: is it OK to give melatonin every night? Or will it promote dependency, and become less effective, meaning I will need to increase the dose? Thanks, Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 However research has shown that many ASD children don't make enough of their own melatonin even under such ideal dark circumstances - hence the need to supplement Sent using BlackBerry® from Orange Re: Melatonin Hi Joanne One of the necessary things with melatonin release I understand is for total darkness in the room. If a child sleeps in a room with a light on, it affects the quality of the regenerative sleep.. Many people have blackout linings on curtains to ensure good quality sleep. Tracey On Tue, Oct 5, 2010 at 8:42 AM, Joanne <joanneallman@... <mailto:joanneallman@...> > wrote: I've just started giving my son melatonin with great results! He's always had difficulty settling at night, although he normally sleeps through. He's now falling asleep a good couple of hours earlier than usual, about an hour after taking the melatonin. I'm giving him just 1 mg (he's 10 and weighs about 80 lb). I was (pleasantly) surprised at how well it works, as 5HTP did nothing for him, in fact, seemed to make him more hyper. Does the fact that he's responded well to melatonin but not to 5HTP suggest that he has a problem converting seratonin to melatonin? My question is: is it OK to give melatonin every night? Or will it promote dependency, and become less effective, meaning I will need to increase the dose? Thanks, Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Hi Joanne From what I've read and from our experience, giving melatonin will not promote dependency, if you stop giving it the body will go back to as it was before supplementation and produce as much or as little as it would have done regardless of supplementation. IMO it is OK to give every night at a low as dose as is affective if possible but still may not always work and for some kids it hardly ever works and as Mandi I believe as reported can give nightmares to some. Kenny > > I've just started giving my son melatonin with great results! He's > always had difficulty settling at night, although he normally sleeps > through. He's now falling asleep a good couple of hours earlier than > usual, about an hour after taking the melatonin. I'm giving him just 1 > mg (he's 10 and weighs about 80 lb). > I was (pleasantly) surprised at how well it works, as 5HTP did nothing > for him, in fact, seemed to make him more hyper. Does the fact that he's > responded well to melatonin but not to 5HTP suggest that he has a > problem converting seratonin to melatonin? > > My question is: is it OK to give melatonin every night? Or will it > promote dependency, and become less effective, meaning I will need to > increase the dose? > Thanks, Joanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Hi Joanne From what I've read and from our experience, giving melatonin will not promote dependency, if you stop giving it the body will go back to as it was before supplementation and produce as much or as little as it would have done regardless of supplementation. IMO it is OK to give every night at a low as dose as is affective if possible but still may not always work and for some kids it hardly ever works and as Mandi I believe as reported can give nightmares to some. Kenny > > I've just started giving my son melatonin with great results! He's > always had difficulty settling at night, although he normally sleeps > through. He's now falling asleep a good couple of hours earlier than > usual, about an hour after taking the melatonin. I'm giving him just 1 > mg (he's 10 and weighs about 80 lb). > I was (pleasantly) surprised at how well it works, as 5HTP did nothing > for him, in fact, seemed to make him more hyper. Does the fact that he's > responded well to melatonin but not to 5HTP suggest that he has a > problem converting seratonin to melatonin? > > My question is: is it OK to give melatonin every night? Or will it > promote dependency, and become less effective, meaning I will need to > increase the dose? > Thanks, Joanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Melatonin is a chronobiotic with a normal pattern of release triggered by falling levels of light reaching the retina, which is why people who have retinas that do not function normally have a high rate of sleep difficulties and people with anopthalmia almost always do. melatonin comes from serotonin etc etc and some people with ASD seem to be missing the enzymes at different stages of the degradation pathway - it depends where whether increasing tryptophan or taking 5HTP or serotonin enhancers or melatonin might work. for some, the pathway is working but the person lacks neural melatonin receptors so the presence of melatonin isn't really the issue. These are the people who can have a bad reaction to melatonin supps (written up recently by Baar et al).Assuming melatonin is working for you, the effect is unlikely to attenuate and there is no evidence that it downregulates natural endogenous production. There are a variety of different formulations available some are prolonged release and some, like the sublingual ones are fast acting. This is really the m\natural pattern you are trying to emiulate assuming the person does not have normal chronobiotic release.Ken From: k.ozbo <k.ozbo@...>Subject: Re: MelatoninAutism Treatment Date: Tuesday, 5 October, 2010, 13:23 Hi Joanne From what I've read and from our experience, giving melatonin will not promote dependency, if you stop giving it the body will go back to as it was before supplementation and produce as much or as little as it would have done regardless of supplementation. IMO it is OK to give every night at a low as dose as is affective if possible but still may not always work and for some kids it hardly ever works and as Mandi I believe as reported can give nightmares to some. Kenny > > I've just started giving my son melatonin with great results! He's > always had difficulty settling at night, although he normally sleeps > through. He's now falling asleep a good couple of hours earlier than > usual, about an hour after taking the melatonin. I'm giving him just 1 > mg (he's 10 and weighs about 80 lb). > I was (pleasantly) surprised at how well it works, as 5HTP did nothing > for him, in fact, seemed to make him more hyper. Does the fact that he's > responded well to melatonin but not to 5HTP suggest that he has a > problem converting seratonin to melatonin? > > My question is: is it OK to give melatonin every night? Or will it > promote dependency, and become less effective, meaning I will need to > increase the dose? > Thanks, Joanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Melatonin is a chronobiotic with a normal pattern of release triggered by falling levels of light reaching the retina, which is why people who have retinas that do not function normally have a high rate of sleep difficulties and people with anopthalmia almost always do. melatonin comes from serotonin etc etc and some people with ASD seem to be missing the enzymes at different stages of the degradation pathway - it depends where whether increasing tryptophan or taking 5HTP or serotonin enhancers or melatonin might work. for some, the pathway is working but the person lacks neural melatonin receptors so the presence of melatonin isn't really the issue. These are the people who can have a bad reaction to melatonin supps (written up recently by Baar et al).Assuming melatonin is working for you, the effect is unlikely to attenuate and there is no evidence that it downregulates natural endogenous production. There are a variety of different formulations available some are prolonged release and some, like the sublingual ones are fast acting. This is really the m\natural pattern you are trying to emiulate assuming the person does not have normal chronobiotic release.Ken From: k.ozbo <k.ozbo@...>Subject: Re: MelatoninAutism Treatment Date: Tuesday, 5 October, 2010, 13:23 Hi Joanne From what I've read and from our experience, giving melatonin will not promote dependency, if you stop giving it the body will go back to as it was before supplementation and produce as much or as little as it would have done regardless of supplementation. IMO it is OK to give every night at a low as dose as is affective if possible but still may not always work and for some kids it hardly ever works and as Mandi I believe as reported can give nightmares to some. Kenny > > I've just started giving my son melatonin with great results! He's > always had difficulty settling at night, although he normally sleeps > through. He's now falling asleep a good couple of hours earlier than > usual, about an hour after taking the melatonin. I'm giving him just 1 > mg (he's 10 and weighs about 80 lb). > I was (pleasantly) surprised at how well it works, as 5HTP did nothing > for him, in fact, seemed to make him more hyper. Does the fact that he's > responded well to melatonin but not to 5HTP suggest that he has a > problem converting seratonin to melatonin? > > My question is: is it OK to give melatonin every night? Or will it > promote dependency, and become less effective, meaning I will need to > increase the dose? > Thanks, Joanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 I believe now blood oxygen levels play the biggest role in the severe sleep problems Norman has and a connection with seizures. I've always been curious why Norman has more seizures when he has a good night's sleep and if he doesn't sleep at all the seizures are far less (in his case he contradicts the common belief that lack of sleeps results in an increase in seizures)!! I've mentioned to all the doctors who see him and they've been puzzled but not been able to give the reason for it !!!! When I spoke to she explained about the shallow breathing during sleep resulting in oxygen levels dipping etc. In N's case this seems so true, our greatest problem, if he sleeps he depletes the oxygen levels so the following day the oxgen levels are insufficient arising in increased seizures. When he doesn't sleep AT ALL, the following day he will have far less seizures, sometimes none just some minor twitches! So I've wondered whether he has or the brain has some kind of mechanism to try and control/prevent sleep in order to reduce/prevent seizures occuring?? It's all very fascinating but a HUGE problem for us, just means I have to really press on with TST and hopefully a time will come when he gets better equipped with the breathing to enable him to sleep. This has been an issue for almost all his life!! We tried Melatonin some years ago, it worked for a month or two and then stopped, since then if we try the Melatonin it just results in more seizures!! emily > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > I know it works with getting off to sleep, but not sure it helps with > > staying asleep during the night. > > My dd has never slept through the night, because as a child she would > > seizure... and this has created, I am sure a fear. She wakes up every > > couple of hours through out the night... not sure if this is now a habit, a > > movement pattern or what... anyway, we trailed melatonin about 15 years ago, > > and it did help, but now the problem is staying asleep. We are going to see > > a sleep consultant in a few weeks... just to check, but wanted to ask if any > > of you parents have a similar situation? > > Thanks > > > > > > * Re: Melatonin > > > > > > > > I have found the best way to work is to give same time each night for > > several nights in a row and then try without, with Sam I found once the body > > clock was reset he was OK then for a few weeks, then he would start being > > later each night and then I'd go back in with another 3 days worth and so > > on. The best dose is the smallest dose that works when you are using it for > > sleep. > > > > Mandi x > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > joanneallman@... writes: > > > > My question is: is it OK to give melatonin every night? Or will it promote > > dependency, and become less effective, meaning I will need to increase the > > dose? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 I believe now blood oxygen levels play the biggest role in the severe sleep problems Norman has and a connection with seizures. I've always been curious why Norman has more seizures when he has a good night's sleep and if he doesn't sleep at all the seizures are far less (in his case he contradicts the common belief that lack of sleeps results in an increase in seizures)!! I've mentioned to all the doctors who see him and they've been puzzled but not been able to give the reason for it !!!! When I spoke to she explained about the shallow breathing during sleep resulting in oxygen levels dipping etc. In N's case this seems so true, our greatest problem, if he sleeps he depletes the oxygen levels so the following day the oxgen levels are insufficient arising in increased seizures. When he doesn't sleep AT ALL, the following day he will have far less seizures, sometimes none just some minor twitches! So I've wondered whether he has or the brain has some kind of mechanism to try and control/prevent sleep in order to reduce/prevent seizures occuring?? It's all very fascinating but a HUGE problem for us, just means I have to really press on with TST and hopefully a time will come when he gets better equipped with the breathing to enable him to sleep. This has been an issue for almost all his life!! We tried Melatonin some years ago, it worked for a month or two and then stopped, since then if we try the Melatonin it just results in more seizures!! emily > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > I know it works with getting off to sleep, but not sure it helps with > > staying asleep during the night. > > My dd has never slept through the night, because as a child she would > > seizure... and this has created, I am sure a fear. She wakes up every > > couple of hours through out the night... not sure if this is now a habit, a > > movement pattern or what... anyway, we trailed melatonin about 15 years ago, > > and it did help, but now the problem is staying asleep. We are going to see > > a sleep consultant in a few weeks... just to check, but wanted to ask if any > > of you parents have a similar situation? > > Thanks > > > > > > * Re: Melatonin > > > > > > > > I have found the best way to work is to give same time each night for > > several nights in a row and then try without, with Sam I found once the body > > clock was reset he was OK then for a few weeks, then he would start being > > later each night and then I'd go back in with another 3 days worth and so > > on. The best dose is the smallest dose that works when you are using it for > > sleep. > > > > Mandi x > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > joanneallman@... writes: > > > > My question is: is it OK to give melatonin every night? Or will it promote > > dependency, and become less effective, meaning I will need to increase the > > dose? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 “Significant activation of epileptiform discharges by sleepâ€, ia a definition that is recognised and accepted by the International League Against Epilepsy. It does not tend to respond to AEDs. There is some success reported with IVIGs and with ketogenic diet.Ken From: emilyscorer <emilyscorer@...>Subject: Re: MelatoninAutism Treatment Date: Wednesday, 6 October, 2010, 2:25 I believe now blood oxygen levels play the biggest role in the severe sleep problems Norman has and a connection with seizures. I've always been curious why Norman has more seizures when he has a good night's sleep and if he doesn't sleep at all the seizures are far less (in his case he contradicts the common belief that lack of sleeps results in an increase in seizures)!! I've mentioned to all the doctors who see him and they've been puzzled but not been able to give the reason for it !!!! When I spoke to she explained about the shallow breathing during sleep resulting in oxygen levels dipping etc. In N's case this seems so true, our greatest problem, if he sleeps he depletes the oxygen levels so the following day the oxgen levels are insufficient arising in increased seizures. When he doesn't sleep AT ALL, the following day he will have far less seizures, sometimes none just some minor twitches! So I've wondered whether he has or the brain has some kind of mechanism to try and control/prevent sleep in order to reduce/prevent seizures occuring?? It's all very fascinating but a HUGE problem for us, just means I have to really press on with TST and hopefully a time will come when he gets better equipped with the breathing to enable him to sleep. This has been an issue for almost all his life!! We tried Melatonin some years ago, it worked for a month or two and then stopped, since then if we try the Melatonin it just results in more seizures!! emily > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > I know it works with getting off to sleep, but not sure it helps with > > staying asleep during the night. > > My dd has never slept through the night, because as a child she would > > seizure... and this has created, I am sure a fear. She wakes up every > > couple of hours through out the night... not sure if this is now a habit, a > > movement pattern or what... anyway, we trailed melatonin about 15 years ago, > > and it did help, but now the problem is staying asleep. We are going to see > > a sleep consultant in a few weeks... just to check, but wanted to ask if any > > of you parents have a similar situation? > > Thanks > > > > > > * Re: Melatonin > > > > > > > > I have found the best way to work is to give same time each night for > > several nights in a row and then try without, with Sam I found once the body > > clock was reset he was OK then for a few weeks, then he would start being > > later each night and then I'd go back in with another 3 days worth and so > > on. The best dose is the smallest dose that works when you are using it for > > sleep. > > > > Mandi x > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > joanneallman@... writes: > > > > My question is: is it OK to give melatonin every night? Or will it promote > > dependency, and become less effective, meaning I will need to increase the > > dose? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 “Significant activation of epileptiform discharges by sleepâ€, ia a definition that is recognised and accepted by the International League Against Epilepsy. It does not tend to respond to AEDs. There is some success reported with IVIGs and with ketogenic diet.Ken From: emilyscorer <emilyscorer@...>Subject: Re: MelatoninAutism Treatment Date: Wednesday, 6 October, 2010, 2:25 I believe now blood oxygen levels play the biggest role in the severe sleep problems Norman has and a connection with seizures. I've always been curious why Norman has more seizures when he has a good night's sleep and if he doesn't sleep at all the seizures are far less (in his case he contradicts the common belief that lack of sleeps results in an increase in seizures)!! I've mentioned to all the doctors who see him and they've been puzzled but not been able to give the reason for it !!!! When I spoke to she explained about the shallow breathing during sleep resulting in oxygen levels dipping etc. In N's case this seems so true, our greatest problem, if he sleeps he depletes the oxygen levels so the following day the oxgen levels are insufficient arising in increased seizures. When he doesn't sleep AT ALL, the following day he will have far less seizures, sometimes none just some minor twitches! So I've wondered whether he has or the brain has some kind of mechanism to try and control/prevent sleep in order to reduce/prevent seizures occuring?? It's all very fascinating but a HUGE problem for us, just means I have to really press on with TST and hopefully a time will come when he gets better equipped with the breathing to enable him to sleep. This has been an issue for almost all his life!! We tried Melatonin some years ago, it worked for a month or two and then stopped, since then if we try the Melatonin it just results in more seizures!! emily > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > I know it works with getting off to sleep, but not sure it helps with > > staying asleep during the night. > > My dd has never slept through the night, because as a child she would > > seizure... and this has created, I am sure a fear. She wakes up every > > couple of hours through out the night... not sure if this is now a habit, a > > movement pattern or what... anyway, we trailed melatonin about 15 years ago, > > and it did help, but now the problem is staying asleep. We are going to see > > a sleep consultant in a few weeks... just to check, but wanted to ask if any > > of you parents have a similar situation? > > Thanks > > > > > > * Re: Melatonin > > > > > > > > I have found the best way to work is to give same time each night for > > several nights in a row and then try without, with Sam I found once the body > > clock was reset he was OK then for a few weeks, then he would start being > > later each night and then I'd go back in with another 3 days worth and so > > on. The best dose is the smallest dose that works when you are using it for > > sleep. > > > > Mandi x > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > joanneallman@... writes: > > > > My question is: is it OK to give melatonin every night? Or will it promote > > dependency, and become less effective, meaning I will need to increase the > > dose? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Dear I am certain that as Norman's diaphragm strengthens and supports a bigger capacity to maintain oxygen, you too will have more healing regenerative sleep in Norman, and less seizures. Norman has started from a point of many more complex issues than Tatijana, however I know in my heart that 's explanation and massage has been key to us understanding Tatijana's non AED responsive seizures.. and most excitingly, to why she is seizure free at the moment.... on our way towards 9 weeks!! Tracey On Wed, Oct 6, 2010 at 2:25 AM, emilyscorer <emilyscorer@...> wrote: I believe now blood oxygen levels play the biggest role in the severesleep problems Norman has and a connection with seizures.I've always been curious why Norman has more seizures when he has a good night's sleep and if he doesn't sleep at all the seizures are far less(in his case he contradicts the common belief that lack of sleepsresults in an increase in seizures)!! I've mentioned to all the doctors who see him and they've been puzzled but not been able to give thereason for it !!!!When I spoke to she explained about the shallow breathing duringsleep resulting in oxygen levels dipping etc. In N's case this seems so true, our greatest problem, if he sleeps he depletes the oxygenlevels so the following day the oxgen levels are insufficient arising inincreased seizures. When he doesn't sleep AT ALL, the following day he will have far less seizures, sometimes none just some minor twitches! So I've wondered whether he has or the brain has some kind of mechanismto try and control/prevent sleep in order to reduce/prevent seizures occuring??It's all very fascinating but a HUGE problem for us, just means I haveto really press on with TST and hopefully a time will come when he getsbetter equipped with the breathing to enable him to sleep. This has been an issue for almost all his life!! We tried Melatonin some yearsago, it worked for a month or two and then stopped, since then if we trythe Melatonin it just results in more seizures!!emily>> >> >> > Do any of you guys know if melatonin would help with STAYING asleep? > > I know it works with getting off to sleep, but not sure it helpswith> > staying asleep during the night.> > My dd has never slept through the night, because as a child shewould> > seizure... and this has created, I am sure a fear. She wakes up every> > couple of hours through out the night... not sure if this is now ahabit, a> > movement pattern or what... anyway, we trailed melatonin about 15years ago,> > and it did help, but now the problem is staying asleep. We are going to see> > a sleep consultant in a few weeks... just to check, but wanted toask if any> > of you parents have a similar situation?> > Thanks> > > >> > * Re: Melatonin> >> >> >> > I have found the best way to work is to give same time each nightfor> > several nights in a row and then try without, with Sam I found once the body> > clock was reset he was OK then for a few weeks, then he would startbeing> > later each night and then I'd go back in with another 3 days worthand so> > on. The best dose is the smallest dose that works when you are using it for> > sleep.> >> > Mandi x> >> > In a message dated 05/10/2010 08:42:31 GMT Daylight Time,> > joanneallman@... writes:> >> > My question is: is it OK to give melatonin every night? Or will it promote> > dependency, and become less effective, meaning I will need toincrease the> > dose?> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Hi If this really is the case then Vit E if not given already might help a bit, it can I believe possibly help the body work a bit better on less oxygen or in other words utilise oxygen more efficiently. Forgive me if I'm off at a bit of a tangent here but I take it that Landau Kleffner has been ruled out, although seizures associated with LK often happen whilst asleep and are not always noticable. Kenny > > > > > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > > I know it works with getting off to sleep, but not sure it helps > with > > > staying asleep during the night. > > > My dd has never slept through the night, because as a child she > would > > > seizure... and this has created, I am sure a fear. She wakes up > every > > > couple of hours through out the night... not sure if this is now a > habit, a > > > movement pattern or what... anyway, we trailed melatonin about 15 > years ago, > > > and it did help, but now the problem is staying asleep. We are going > to see > > > a sleep consultant in a few weeks... just to check, but wanted to > ask if any > > > of you parents have a similar situation? > > > Thanks > > > > > > > > > * Re: Melatonin > > > > > > > > > > > > I have found the best way to work is to give same time each night > for > > > several nights in a row and then try without, with Sam I found once > the body > > > clock was reset he was OK then for a few weeks, then he would start > being > > > later each night and then I'd go back in with another 3 days worth > and so > > > on. The best dose is the smallest dose that works when you are using > it for > > > sleep. > > > > > > Mandi x > > > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > > joanneallman@ writes: > > > > > > My question is: is it OK to give melatonin every night? Or will it > promote > > > dependency, and become less effective, meaning I will need to > increase the > > > dose? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 I don't know about all this breathing stuff, TST etc but I do know that has great breathing, he learnt to breath deeply from swimming under water which he can do for an amazing length of time and once he falls to sleep he is out till he is woken and can easily do 9-10 hours straight. Vicky In a message dated 06/10/2010 20:35:17 GMT Daylight Time, mark.grabiec@... writes: this is fascinating and true for our boy to an extent. He does on occasion breathe deeply at night but mostly it's as if he's breathing as shallowly as possibly. My mum was the same, but not me. It's really odd. What will make him breathe? He does yoga, he runs around, he just doesn't really take in a good lungful. I would say he was breathing from his diaphragm but just lightly (this is possible) Running? Should we just get him knackered to make him gasp air in? He can run for miles without tiring but perhaps that's the answer? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 this is fascinating and true for our boy to an extent. He does on occasion breathe deeply at night but mostly it's as if he's breathing as shallowly as possibly. My mum was the same, but not me. It's really odd. What will make him breathe? He does yoga, he runs around, he just doesn't really take in a good lungful. I would say he was breathing from his diaphragm but just lightly (this is possible) Running? Should we just get him knackered to make him gasp air in? He can run for miles without tiring but perhaps that's the answer? > > > > > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > > I know it works with getting off to sleep, but not sure it helps > with > > > staying asleep during the night. > > > My dd has never slept through the night, because as a child she > would > > > seizure... and this has created, I am sure a fear. She wakes up > every > > > couple of hours through out the night... not sure if this is now a > habit, a > > > movement pattern or what... anyway, we trailed melatonin about 15 > years ago, > > > and it did help, but now the problem is staying asleep. We are going > to see > > > a sleep consultant in a few weeks... just to check, but wanted to > ask if any > > > of you parents have a similar situation? > > > Thanks > > > > > > > > > * Re: Melatonin > > > > > > > > > > > > I have found the best way to work is to give same time each night > for > > > several nights in a row and then try without, with Sam I found once > the body > > > clock was reset he was OK then for a few weeks, then he would start > being > > > later each night and then I'd go back in with another 3 days worth > and so > > > on. The best dose is the smallest dose that works when you are using > it for > > > sleep. > > > > > > Mandi x > > > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > > joanneallman@ writes: > > > > > > My question is: is it OK to give melatonin every night? Or will it > promote > > > dependency, and become less effective, meaning I will need to > increase the > > > dose? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Thank you everybody for all your replies about melatonin! It's definitely helping my son to fall asleep at night, so I'm glad the consensus appears to support daily dosing.Thanks again!Joanne> > >> > > I've just started giving my son melatonin with great results! He's> > > always had difficulty settling at night, although he normally sleeps> > > through. He's now falling asleep a good couple of hours earlier than> > > usual, about an hour after taking the melatonin. I'm giving him just 1> > > mg (he's 10 and weighs about 80 lb).> > > I was (pleasantly) surprised at how well it works, as 5HTP did nothing> > > for him, in fact, seemed to make him more hyper. Does the fact that he's> > > responded well to melatonin but not to 5HTP suggest that he has a> > > problem converting seratonin to melatonin?> > > > > > My question is: is it OK to give melatonin every night? Or will it> > > promote dependency, and become less effective, meaning I will need to> > > increase the dose?> > > Thanks, Joanne> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Hi Kenny, Yes, Landau Kleffner was ruled out, I appreciate your asking. I also give him 400iu of Carlson's Vit E. Not certain if this is a good dose for a 16yr old (43kgs). Thanks again, emily > > > > > > > > > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > > > I know it works with getting off to sleep, but not sure it helps > > with > > > > staying asleep during the night. > > > > My dd has never slept through the night, because as a child she > > would > > > > seizure... and this has created, I am sure a fear. She wakes up > > every > > > > couple of hours through out the night... not sure if this is now a > > habit, a > > > > movement pattern or what... anyway, we trailed melatonin about 15 > > years ago, > > > > and it did help, but now the problem is staying asleep. We are going > > to see > > > > a sleep consultant in a few weeks... just to check, but wanted to > > ask if any > > > > of you parents have a similar situation? > > > > Thanks > > > > > > > > > > > > * Re: Melatonin > > > > > > > > > > > > > > > > I have found the best way to work is to give same time each night > > for > > > > several nights in a row and then try without, with Sam I found once > > the body > > > > clock was reset he was OK then for a few weeks, then he would start > > being > > > > later each night and then I'd go back in with another 3 days worth > > and so > > > > on. The best dose is the smallest dose that works when you are using > > it for > > > > sleep. > > > > > > > > Mandi x > > > > > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > > > joanneallman@ writes: > > > > > > > > My question is: is it OK to give melatonin every night? Or will it > > promote > > > > dependency, and become less effective, meaning I will need to > > increase the > > > > dose? > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Hi , Not sure what to say or suggest, with Norman, the advice given is to avoid strenuous excercise, not that he is capable of doing any form of excercise really! Norman's chest comes down very low and his rib cage is box shaped, he also has a minor curvature to his spine and this all impacts on his breathing, therefore, strenuous excercise will require more oxygen. Also Norman tires quickly and needs to sit frequently, only walks a couple of feet before he has to sit. So does short bursts of bouncing on a gym ball and jumping on the trampoline all supported, otherwise his other passion is the swimming pool (but just walks and paddles in it with floats). I think Yoga is good and gets you to breathe in deeply without too much strain on the body. Other thing is during sleep Norman will wake up frequently gasping otherwise the breathing is very shallow. emily x > > > > > > > > > > > > > > > Do any of you guys know if melatonin would help with STAYING asleep? > > > > I know it works with getting off to sleep, but not sure it helps > > with > > > > staying asleep during the night. > > > > My dd has never slept through the night, because as a child she > > would > > > > seizure... and this has created, I am sure a fear. She wakes up > > every > > > > couple of hours through out the night... not sure if this is now a > > habit, a > > > > movement pattern or what... anyway, we trailed melatonin about 15 > > years ago, > > > > and it did help, but now the problem is staying asleep. We are going > > to see > > > > a sleep consultant in a few weeks... just to check, but wanted to > > ask if any > > > > of you parents have a similar situation? > > > > Thanks > > > > > > > > > > > > * Re: Melatonin > > > > > > > > > > > > > > > > I have found the best way to work is to give same time each night > > for > > > > several nights in a row and then try without, with Sam I found once > > the body > > > > clock was reset he was OK then for a few weeks, then he would start > > being > > > > later each night and then I'd go back in with another 3 days worth > > and so > > > > on. The best dose is the smallest dose that works when you are using > > it for > > > > sleep. > > > > > > > > Mandi x > > > > > > > > In a message dated 05/10/2010 08:42:31 GMT Daylight Time, > > > > joanneallman@ writes: > > > > > > > > My question is: is it OK to give melatonin every night? Or will it > > promote > > > > dependency, and become less effective, meaning I will need to > > increase the > > > > dose? > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Start with 5HTP and if 300 does not help then add melatonine. Watch these 9 videos. http://www.youtube.com/watch?v=vPGdqpMxU24 & translated=1 I am using the Free version of SPAMfighter.SPAMfighter has removed 1909 of my spam emails to date.Do you have a slow PC? Try free scan! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Melatonin does nothing whatever for me - in fact I get the feeling it makes sleepless nights worse. The best trick I know for those bouts of insomnia is sipping water when I awake and it does seem to help me drop off again. MargaretFrom: "jprocure@..." <jprocure@...>low dose naltrexone Sent: Wed, 16 February, 2011 19:47:38Subject: [low dose naltrexone] Melatonin Is there anyone else here for whom melatonin does pretty much nothing? I have to take a handful (@15mg) to get any effect at all. So I don't often take it. Jaye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 didnt work for me, placebo effect, if you think it will do you good it mayregards peter/london From: "jprocure@..." <jprocure@...>low dose naltrexone Cc: Sent: Wednesday, 16 February 2011, 18:47Subject: [low dose naltrexone] Melatonin Is there anyone else here for whom melatonin does pretty much nothing?I have to take a handful (@15mg) to get any effect at all.So I don't often take it.Jaye Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.